Public Restroom Issues...

[Walter S]

Hello everyone. I have another issue I would love to hear any advice you may have on. I also brouhgt this up on a crohn's disease support site that I belong to. Unfortunatley this si a huge problem with me and having such stomach issues do not make this any easier. This is kind of an embarassing and sensitive subject to bring up here, but I feel I should bring it up, because I am having a hard time with this, and I need some advice on how to deal with it. I involves the use of public restrooms when I need to poop/diarrhea. Very often, I get pretty bad diarrhea. When I say I can spend an hour or more straight on a toilet, I am NOT exaggerating! So, I am not sure how to handle this situation in public restrooms. Like I said this is ambarassing, but... I have some issues with using pubic restrooms for those kinds of problems. First of all, I am simply not comfortable in public restrooms because of the lack of privacy! Then there is the issue of many of them being very dirty and/or not stocked with toilet paper. Also, there is sometimes the problem of having to wait for a stall and not being able to hold it! Then there is also the problem of the possibility that I will be using the bathroom and in a lot of pain, etc, taking a LONG time and others will be waiting impatiently. I am so very uncomfortable with all of this. When I first joined the site many people recommended that I get an "I can't wait card", I immediately payed for one on line but I have not received anything yet in over a month, now. I have emailed them (ccfa) twice! Does anyone have any advice on how I can get over some of these fears and problems I am having. It's very embarassing, and I know I should not be afraid of using public restrooms, but I can't help it. I just am!

[Nantzie]

I know exactly what you mean. I don't have any advice, although I like the idea of a card explaining the situation. I was lucky enough as a stay at home mom that I didn't have to go anywhere, and I could go run errands at times when stores weren't busy.

Years ago I used to have a computer program where you could print your own business cards, etc. You actually could do all sorts of things with it, print postcards, brochures, etc. I think I got it at Office Max or Staples. Avery makes business card and postcard blanks just like the labels they make. So you can make your own and have it say whatever you want. You can also get laminating sheets that are basically just big stickers that you can use so it doesn't get bent up in your wallet.

Hope that helps. I'm glad you found us here. It's nice to be able to talk about this stuff with people who really understand what you're going through.

Nancy

[Lisa]

Walter:

I can't comment about your Chrohns as I am not as familiar with that. When I was really sick, I could not leave the house for two months. I could not drive down the road five minutes because I had no warning what-so-ever. It gradually got better, with a few oops.

After I felt comfortable venturing out, I tried to anticipate a mad rush. I would make all available trips to a rest room when the urgency was not an issue. After healing a bit, I would get the tell tale feeling of nausea which allowed me time for find a rest room.

Try to head off the mad rush. And as far as the other people, that would not concern me. You have an illness. On the humorous side, I think I would knock someone over before I would go in my pants yelling "I have a problem"...it would clear the room and I would have it all to myself.

Please know that this is a very common subject here and feel no embarrassment. We have all been there.

[LoveBeingATwin]

I know this is a very embarrasing topic but EVERYONE has been in your situation one time or another celiac or not. I know how you feel. If it makes you feel any better, I was in this same situation this weekend, body didn't like the silk chocolate soy milk. I have had to stop immediatley and use public restrooms, and still do. I hate to but when I am not feeling well and have the big D I don't care who is around. That might sound really bad but it's not like it something we can control, because if we could I am sure we ALL would so we wouldn't have to use those nasty public toilets. The only advice I have is to not be so hard on yourself and just remeber it's kind of out of your control. I am sure someone would understand that you might need to be the next in line giving your situation. You shouldn't stress about it so much, maybe that might be making the situation worse. I know sometimes my nerves make my stomach hurt worse when I worry about making it to the bathroom, if the bathroom is even open, if people will hear me etc. Just remember we are all HUMAN and it happens to everyone, maybe not as often. Hope this helps.

[blueeyedmanda]

Oh boy can I ever relate...once before I was diagnosed. I got sick at Walmart and had to break down and use their bathroom before I had an accident. I don't know about anyone else but Walmart has the worst bathrooms in the world, they are so unclean and disgusting.

This is a very common topic and I am glad there is somewhere we can talk about it.

[ReneCox]

whats an I cant wait card?

[Michi8]

Oh boy can I ever relate...once before I was diagnosed. I got sick at Walmart and had to break down and use their bathroom before I had an accident. I don't know about anyone else but Walmart has the worst bathrooms in the world, they are so unclean and disgusting.

This is a very common topic and I am glad there is somewhere we can talk about it.

Sadly, some of the worst public washrooms I've seen have been in the U.S....especially in NYC. Only the washroom at the airport in Moscow, Russia was worse. The Walmarts around here are actually not all that bad.

Michelle

[Walter S]

whats an I cant wait card?

An 'I can't wait card" is a card given by the CCFA (see www.ccfa.org). It is a card explaining what IBD is and why a patient may be in urgent need of a restroom. The theory is that you carry it in your wallet and if you are in a place where there are customer or employee only restrooms, you can show the manager your card and hopefully will let you use the bathroom during an emergency. I learned about this after I was diagnosed with Crohn's.

[alyssasgabby]

Hello everyone. I have another issue I would love to hear any advice you may have on. I also brouhgt this up on a crohn's disease support site that I belong to. Unfortunatley this si a huge problem with me and having such stomach issues do not make this any easier. This is kind of an embarassing and sensitive subject to bring up here, but I feel I should bring it up, because I am having a hard time with this, and I need some advice on how to deal with it. I involves the use of public restrooms when I need to poop/diarrhea. Very often, I get pretty bad diarrhea. When I say I can spend an hour or more straight on a toilet, I am NOT exaggerating! So, I am not sure how to handle this situation in public restrooms. Like I said this is ambarassing, but... I have some issues with using pubic restrooms for those kinds of problems. First of all, I am simply not comfortable in public restrooms because of the lack of privacy! Then there is the issue of many of them being very dirty and/or not stocked with toilet paper. Also, there is sometimes the problem of having to wait for a stall and not being able to hold it! Then there is also the problem of the possibility that I will be using the bathroom and in a lot of pain, etc, taking a LONG time and others will be waiting impatiently. I am so very uncomfortable with all of this. When I first joined the site many people recommended that I get an "I can't wait card", I immediately payed for one on line but I have not received anything yet in over a month, now. I have emailed them (ccfa) twice! Does anyone have any advice on how I can get over some of these fears and problems I am having. It's very embarassing, and I know I should not be afraid of using public restrooms, but I can't help it. I just am!

Ah, boy, have I been there! At work, at Weddings, Church, you name it, I can sympathize! I FEEL your pain and anxiety.

Some suggestions: Yes--I carry Kleenex in my purse with a tube of hand sanitizing gel.

Um-how to put this....OK, is one of your fears the "noise" that often occompanies gutening and the big D? Very embarrassing! I've been known to flush quite a bit as I am in a public restroom. My husband even jokes with me and calls them my "courtesy flushes" Though sometimes I just have to say "excuse me". I also carry a small bottle of body spray to help "mask" any odors, not the best solution, but people genuinely seem to know I'm trying my best.

To help keep things on the lighter side, here's a true story: After a particularly difficult time, I was in a restroom at work, with two other ladies. One in the stall next to me, and one at the sink "preening". Though I tried my hardest with the "courtesy flushes", I left what my doctor call "Malodorous" FUMES! The woman in the stall next to me said "That smells good!". I was stunned, and remained quiet while the woman at the sink snickered. Then all of a sudden the woman at the sink laughed and said "OH, my PERFUME!" (she had just sprayed some) which was exactly what the woman in the stall was talking about! I exited the stall and washed my hands at the sink without a complex after that!

[NoGluGirl]

Dear Walter,

Man, do I know how you feel! I had gallbladder trouble too, and I had even more difficulty with that than I normally did while in driving school many years ago. The other members of the class made fun of me. It was awful! I still do not like using public restrooms! I agree that the Wal-Mart bathrooms are disgusting. I make a point not to stay out long for that reason! I usually take anti-nausea medication when I leave the house if I need it. Promethazine also helps with bowel trouble. It is my only aid to stop the misery of a glutening. It saves me from heaving to death! The down side is it makes you terribly sleepy. A colon medication I used to take was Levsin. It worked very well and helped the cramping some as well.

Sincerely,

NoGluGirl

[Fiddle-Faddle]

Hi, Walter, and welcome aboard!

Just out of curiosity--do you have gluten intolerance/celiac as well as Crohn's? Have you totally eliminated gluten from your diet, or are you "gluten-lite?" There is an amazing amount of "hidden" gluten in unexpected places like soy sauce, "lite" ice creams, and even deli tuan salad (contains bread crumbs ). And might you have other food intolerances, such as casein? Many people here have multiple food intolerances--seems like the longer one eats gluten without knowing it's causing problems, the more food intolerances one gets.

Finally, you might want to check out the last 10 or 20 pages of the "OMG--I might be on to something" thread. Some research was just posted on that thread linking Crohn's to Lyme disease (which seems to be a factor in gluten intolerance for an awful lot of people here)--worth investigating!

[alamaz]

Hi- Just wanted to say I can sympathize with how you feel. This is the girl who will take an "early" lunch to go home and use the home base instead of being "humiliated" at work (it's a small office and several people have the great desk locations enabling them to hear *everything* that goes on in the bathrooms). That being said, I'm terrified of flying so when I am at the airport I live on the toilet closest to the gate until they board the plane. Sometimes there is just no other choice and the bottom line is, every one has a bad D day some just more than others and even those people without a diagnosed stomach ailment. I always use the toilet seat covers or cover the seat in a million strips of toilet paper and also bring hand sanitizer (also you can rub the hand sanitizer on the toilet seat with the toilet paper). Do the courtesy flushes and if there is some one else in the restroom with you and is making a big deal out of the odors or noises just try to ignore them. They'll be done before you most likely and they won't know who you are outside of that tiny room since they most likely didn't see your face.

I hope you start to feel better soon!

[Walter S]

Hi, Walter, and welcome aboard!

Just out of curiosity--do you have gluten intolerance/celiac as well as Crohn's? Have you totally eliminated gluten from your diet, or are you "gluten-lite?" There is an amazing amount of "hidden" gluten in unexpected places like soy sauce, "lite" ice creams, and even deli tuan salad (contains bread crumbs ). And might you have other food intolerances, such as casein? Many people here have multiple food intolerances--seems like the longer one eats gluten without knowing it's causing problems, the more food intolerances one gets.

HI! Yes I do unfortunately have celiac and Crohn's both were diagnosed in the last few months. I think I am eating gluten free as I have been to a nutritionist, but I am not sure about the hidden gluten. It sounds like something I will need to learn more about...

[Fiddle-Faddle]

HI! Yes I do unfortunately have celiac and Crohn's both were diagnosed in the last few months. I think I am eating gluten free as I have been to a nutritionist, but I am not sure about the hidden gluten. It sounds like something I will need to learn more about...

This is a great place to learn about hidden gluten!

You're gonna have to read labels like a maniac. Most soy sauces list wheat as the second ingredient (before soy!), and cereals like Rice Krispies and Corn Flakes (and many, many others) contain malt, which is definitely gluten. Oats are a major cross-contamination issue, as they are grown on the same fields as wheat and processed in the same mills, so most of us here don't eat them.

Even some deli meats (ham, turkey, etc) have gluten. And many meds contain gluten.

You might try keeping a food diary and see when you get the worst tummy problems and what you've eaten the 2 or 3 meals before and that may answer a lot for you.

[BamBam]

Hello Walter

I went through a lot of this for several years, and it wasn't until I was totally gluten free and casien/dairy free that my bathroom episodes really quieted down. Now, when I have to go, I usually have plenty of wait time (and I say usually, I still have a few panic attacks here and there). Have you tried gluten free and dairy free?

When I had problems, I knew where every bathroom, traffic exit etc was in the State of Montana. That sounds ridiculous, I know, but if I am in a hurry, I tell people in a line that I am very sick, and they have always let me go ahead. Regarding sound and smell, I don't care about that anymore, we have no control over that at all. My fears and anxieities were huge about these situations in the beginnings, but when a person is sick, we have no control over certain things.

BamBam

[VegasCeliacBuckeye]

Hello Walter

I went through a lot of this for several years, and it wasn't until I was totally gluten free and casien/dairy free that my bathroom episodes really quieted down. Now, when I have to go, I usually have plenty of wait time (and I say usually, I still have a few panic attacks here and there). Have you tried gluten free and dairy free?

When I had problems, I knew where every bathroom, traffic exit etc was in the State of Montana. That sounds ridiculous, I know, but if I am in a hurry, I tell people in a line that I am very sick, and they have always let me go ahead. Regarding sound and smell, I don't care about that anymore, we have no control over that at all. My fears and anxieities were huge about these situations in the beginnings, but when a person is sick, we have no control over certain things.

BamBam

you know who has the cleanest bathrooms (usually)

1. McDonalds

2. In N Out Burger

3. Nordstrums (them are some niiiiiiice bathrooms)

4. Hotel Lobbies

Worst Bathrooms

1. Wendys

2. Buffalo wild Wings

3. Taco Shops

4. Gas Stations

[Walter S]

Thank you everyone! Keep the info coming please. I can use all the help with this issue I can get and you have all provided some great ideas! I guess the embarassment part will just take time, but it really is so hard for me to handle!

[Cynbd]

Hi Walter,

Boy, you have definitely come to the right place when it comes to a group of people that can completely relate! I spent a couple of years revolving my life around the 'bathrooms' before I figured it out -- I guess I was always thankful when there was a bathroom, because I am not sure how I would have cleaned up after an accident like that I can assure you I tried to imagine a few times, "how I was going to clean my car"

I know with my diet changes (which took several months to really get right) I have slowly become less scared and have less problems. Every now and then I feel cramps, and I get instantly paranoid.... now I just take an Immodium and worry about it later... and later isn't so bad <--- This is only when I have to be somewhere and can't deal with the added stress... which just seems to 'pile on'

I can only speak for Celiac Disease, but I can say when I started out gluten-free I initially felt really great for the first few weeks, then I became much less tolerant and started having lots of problems again. I really had to check through my diet, and stick to basics. My goal was to feel better, and not spend 'extra' time in the bathroom...

Like many have said around here, you should try to stick with some very basic foods that you know are safe, and let your body heal. I still have a very small group of foods I eat everyday, but I know I won't be sick.

A friend of mine's brother has Crohns, and he swears by Probiotics... he actually eats Activia everyday, but we can't because of the gluten threat, but there are other options...

I wish you the very best -- This is a good place to be to help you with gluten issues --- I hope you find the right mix.

Peace,

[NoGluGirl]

Dear Walter,

There are some things you may not know we could eat.I have a list that should really help. This is overwhelming. I went through this with myself six months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margerine

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip

Philadelphia Cream Cheese

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)

Snack Foods:

Utz Potato Chips (found at Sam's Wholesale Club)

On The Border Tortilla Chips (not the guacamole flavored ones, the regular restaurant style)

Lay's Stax Potato Chips

Cool Ranch Doritos (Nacho cheese has gluten)

Act II Microwave Popcorn

Cheetos

3 Musketeers candy bars

Butterfinger candy bars

Reese's Peanut Butter Cups

Meat and Protein :

Eggs

Great Value Frozen Boneless, Skinless Chicken Breasts

Extra Lean ground beef

Carl Buddig lunchmeats all are safe

Johnsonville Original Bratwursts

Kraft Cheese Shredded or sliced (Kraft is a great company, they never hide gluten in their labels. If it does not say wheat, barley, oats or rye, then it is not in there!)

Cereals:

Cocoa Pebbles

Fruity Pebbles

Dora The Explorer Cinnamon Stars

Seasonings:

Durkee Cinnamon-ground

Durkee Ginger-ground

Durkee Chili powder

Durkee Vanilla Extract (in fact, all of their liquid flavorings, food colorings, and extracts are g.f.)

Emeril's Essence - Asian, Italian

Ortega Taco Seasoning (In fact, since they are under a very strict labeling policy, all of their products are gluten free at this time)

Miscellaneous:

Ortega Taco Shells

Starkist or Great Value Tuna

Butter Buds

Great Value Soy Milk

Lettuce

Tomatoes

Apples

Pears

Carrots

Great Value Canned Fruits and Vegetables

Del Monte Canned Fruits and Vegetables

Ore Ida Tater Tots

Ore Ida French Fries

Hormel Chili

Hormel Spam

Hormel Turkey Spam (Oven Roasted and Smoked)

Jimmy Dean Fresh Taste Fast Sausage (links, rolls, and patties)

Plumrose Bacon

PAM Non-Stick Cooking Spray (all except for PAM for baking; it has flour)

Beverages:

Coca-Cola (Diet, Regular, Vanilla, Caffeine Free)

Diet Rite

Folgers Coffees (all including Cappuccinos)

Luzianne Tea (We get decaf)

Arizona Teas

Ocean Spray Cranberry Juice

Some Household Items that are safe include:

Cascade Dishwashing Detergent

All Laundry Detergent

Wisk Laundry Detergent

Dawn Dish Soap (all including the Power Disolver)

SoftSoap Hand Soaps

Murphy's Oil Soap

Hygiene, Cosmetics, and Beauty Items:

Dove Soaps, Shampoos, Conditioners, Lotions, and Styling Aids (Will clearly label gluten if present)

Crest Whitening Expressions Toothpastes

Colgate Toothpastes

Suave Soaps, Shampoos, Conditioners, Lotions, and Styling Aids (Will clearly label gluten if present)

Maybelline (Gluten is clearly labeled when present)

CoverGirl (Gluten is clearly labeled when present)

Wet'n Wild (All except for one of the mascaras)

Olay Quench Body Lotion

Crest WhiteStrips

Colgate Simply White

I included cosmetics because your wife could accidentally gluten you if she kisses you! You may want to avoid dairy also if you have not been already. If you can handle it, eat it. I hope this helps!

Sincerely,

NoGluGirl

P.S. You are in the U.S. right? If you are in Canada, I know I site you can go to for products you can have. The ingredients used in these items in Canada varies from those made here. I do not want you getting sick!

[corinne]

Also, depending how "outdoorsy" you are and where you are (if you're driving on the interstate or whether you're in the city), a nice spot in the forest is a lot better than any reststop. I carry a few rolls of TP in the car and handwipes. I have "visited" a lot of scenic views throughout Montana when I was living there.